The photos near her bed at the skilled nursing facility show her as robust. She was lean with sinewy muscles during her first fifty-five years. Her character was firm, too. The honor and integrity of her family yielded the attractiveness of a trustworthy individual. Her long dark mane of hair framed eyes alive with love for people and nature. Although physically and spiritually attractive, and many men would no doubt drop everything to be near her, she never married. She was as independent as the birds she sketched.
Her pencil sketches from long ago made fowl and animals like horses and raccoons just jump off the page as they were now displayed around her bed. Throughout life, her hands seemed to work with delight caring for animals – especially dogs and horses. She enjoyed grooming, feeding, and nurturing. Her fingers were calloused as she split and stacked fire wood. Yet she crocheted delicate pieces for her sisters and parents when funds were tight at Christmas.
And now, looking into her eyes, I realize that the very life essence of this woman is so powerful that it temporarily causes me to forget that her strong, capable body is presently really frail and small and shriveled; that her strong hands can no longer do much, not even feed her own mouth; that her hard working frame cannot leave the bed where she is now confined.
Paget’s disease has left misshapen bones and a severe curvature of the spine. She now weighs less than eighty pounds. For fifteen years she has endured excruciating pain in the bones and joints, incessant headaches from pressure on nerves throughout her emaciated body. Her muscle and skin have wasted away leaving arms and legs the size of a splitting mull handle she used to wield; her hands appear skeletal.
Even though a man of faith in the holy character of God and a theological understanding of the reasons for disease and suffering, my soul hurls the centuries old question at Him: How can you allow this to happen?
But I don’t sense anger and bitterness in her spirit. Like her siblings, she may have days where the spiritual and emotional struggle is great. But it seems she is dealing with it well.
Her eyes, darkened by continual pain, still twinkle with the joy of her humorous observations and crackle with the fire of her resolve to do what seems to others to be small things – moving the straw in the glass with her lips and tongue, grasping the call button to summon the nurse.
I see our reflection in the mirror on the bathroom door, me sitting on a bedside chair in my prime, (just about the age when she first faced the disease), and her, bent and gnarled under a sheet, still somehow incredibly gorgeous. I find those once strong hands are still active. I slip my finger into the tunnel formed by her contracted fingers and feel the slight tightening of her muscles.
I know from her eyes that we are having a moment – one more moment – when she can again experience what remains within her spirit – that space inside untouched by disease. In order to hear, I lay my head next to hers on the pillow. She talks about her favorite horse, working outdoors with her father and grandfather, and making popcorn to share with her family when they got their first TV. She asks about my pets, my family and first TV. Her wry wit causes us to chuckle, helping to break the monotony of lonely, aching hours.
Somewhere in the conversations, it strikes me that all of us have plenty in our lives that could distract from the beauty of our nature, of the very core of who we are, if we were to let it.
Perhaps it’s a disease, a condition, the loss of our youthful vitality. What of grief, disappointments and emotional wounds? Perhaps we’ve made an awful mistake, and don’t know how to recover; how to believe ourselves worthy again. Perhaps bitterness has shriveled our soul.
These illnesses are part of life. But the brave and resilient, though facing the inescapable truth of something like an incapacitating illness, can still find a way to keep the enjoyment of beauty within, to remember the passion to live the way we did before the worst had occurred.
That’s the joy we have no matter how we contribute from our resources to others. Each of us has our own scars that might hold back our giving. We nevertheless have something lovely within that can actually be enhanced by our pain. There is something purely and severely honorable about those who reflect the loveliness of a wealthy spirit in spite of the suffering.
In our caregiving, we at Wings of Hope have the honor of being a final mirror to peoples’ hearts. Not a mirror revealing the image of a diseased person as the mirror on the bathroom door showed, but a mirror that reflects the glory of that something striking within.
Author: Greg Carlson
Spiritual Care Coordinator
Wings of Hope Hospice